Houston, we have a provisional diagnosis.

[eurydicebound]

Today we went to the doctor with Alisdair. Specifically, we went to the ASTAR Center, which deals specifically with autism diagnosis and various helping therapies. We spent about two hours with the doctor, discussing Alisdair's history, his issues, all the paperwork we brought along, all the things we're worried about, his strengths and weaknesses, etc. David and I both went so as to better give input. Happily, he seemed to get what we were talking about, and all the testing we'd had done at least let us take a short cut through some of the potential paperwork.

The end result? A provisional diagnosis of Asperger's Syndrome to be followed up with additional autism-specific testing in a couple of weeks to pin it down for certain. We have some suggestions as to therapies and activities we can try that may very well help, and a follow up scheduled for the end of the summer.

This is really the news I'd been hoping for. This will almost certainly give me the sheet of paper I need to get him the help in school that he needs, and will make things a lot easier. It's a good clinic where they have a ton of experience in dealing with this. The head doctor is a neurologist, which again cuts through a lot of bullshit, and it also means that if medication ends up being necessary (apparently some ADD medications can help with sensory overload/mental processing stuff and some anxiety meds help with outbursts, even though nothing treats the problem directly), he can prescribe them and knows something about what he's suggesting.

So if this is what I was hoping for, why do I feel so sad?

Comments

[iamnikchick.livejournal.com]

Aw hon, I'm sorry. Putting a name to it is the first step in getting the right supports in place. Putting a name to it also means having to face a tangible thing and all the challenges that implies.

I have several friends who have gone through the same autism/asperger's spectrum diagnoses with their kids. If you need a sounding board, feel free to use me. Sounds like you're in good hands at your clinic, though.

[anaka.livejournal.com]

Thank you, hon. *hug*

Yeah, this is the center we're taking Alisdair to: http://www.astarcenter.org/
I've been nothing but impressed with them so far. I have to say though... the thing that killed me was seeing the other families there. I'd see the other children out of the corner of my eye move in a certain way or have a certain expression, and I'd recognize it as something my kid does too. I'd suspected he had this for a long time, but it was really going there and seeing other ASD kids that really brought it home that it's not just a label, it's a real thing that other people have too.

[knowmad.livejournal.com]

Well, damn. Sometimes things that help can make you feel sad, too.

Like when I finally found out I had depression -- oh sure, it was good to know it wasn't just me acting like an idiot, but it's not like I was pleased as punch about it, either.

Sorry to hear about this, but it sounds like you are doing all you can to help.

[anaka.livejournal.com]

Yeah. I'm trying, at any rate. Luckily it doesn't seem to have fazed him... he doesn't need to deal with that.

[trollbabe.livejournal.com]

Because the answer which we know is the right one is not always the one we want, in our heart of hearts.

He's your baby. He's a big boy now, but he's still your baby. And you want him to be perfect. Not for your sake, but for his. Because life is easier if you're starting from "perfect" than if you're starting from "ADD" or "Asperger's" or even just "Allergic to jam." And Asperger's is, while certainly something he can live with, a bit more serious than "allergic to jam."

It's okay to grieve, a little bit. It's okay to go, "Dammit, I know life is not fair, but that didn't stop me from wanting it to be unfair in my son's favor."

He'll be okay. And you'll be okay. But it's okay to be a little sad, for now.

[anaka.livejournal.com]

I cried when I read this, so I know you're right on target (not cried in a bad way, just... a little sniffly, and a bit relieved). Thank you.

[(Anonymous)]

*hugs*

That's okay. I got a bit sniffly when I wrote it, too.

[trollbabe.livejournal.com]

Dammit. That was me. Stupid LJ. Ruining our tender little moment there. The bastards.

[herrw.livejournal.com]

My son and I have a prayer that we infrequently share, but we do so often enough that he has learned to use it in the toughest of times: "Thank you Lord for the obstacles you have set before me, for without them I could not have overcome." It reminds us that no one comes out of life unscathed or unscarred, but we all get throgh it somehow.

Asbergers is not the end... it is the setting of the board before the game gets played. And it is not an overwhelming handicap either, although it can be tough, I am sure. I wish I had some experience with it, to share, but I hope that my own experience with neurological abnormality can help.

As a man with Touret's Syndrom, I can vouch for the fact that what might seem overwhelming now could easily become a source of pride in the future. I managed, without medication, to get a handle on a disability which originally left me almost unable to function, to the point that most do not even suspect that I have the condition. I owe my success to my parents, who accepted nothing but success from me.

One day your son will blog, "you might not know this, but I was born with Asberger's, and yet became a success despite the condition. I owe that success to my Mom."

Keep the faith, and all my best wishes in your struggles.

[anaka.livejournal.com]

Tourettes isn't exactly a walk in the park. I congratulate you on your success, and I thank you for sharing that with me. I hope my kiddo has the same success with his disability.

[anidada.livejournal.com]

You're doing well by him, hon, and he's a lucky kid. *holds you tight*

[anaka.livejournal.com]

*hug* Thank you, dear heart. I hope you're right.

[tfbretz.livejournal.com]

When someone dear to me (and you, as a matter of fact) was diagnosed with Bipolar Disorder, she found herself constantly wavering between finally having a name for what was wrong and feeling like all of the things she'd always thought of as entertaining personality quirks were just part of some biochemical malfunction. My former boss, who worked for many years with cancer and then AIDS patients, one day said, "We see this all the time with terminal illnesses. People fixate on the label of their diagnosis, as if that's all they are."

In the long run, I know your feelings will change. I know first hand what a boon it is to be able to hand the school a medical diagnosis. If it can change things drastically in a backwater like Texas, I imagine it'll make a world of difference to your Alisdair.

[anaka.livejournal.com]

Sigh. Yeah. I mean, on the one hand, the rest of the day went on as it ever had. Alisdair is no different now than he was before. It's just... like I said to iamnikchick above, it's suddenly struck me that this is a real thing, not just a word on a screen somewhere that I think might apply. It's odd that on the verge of having more help than we ever have, I suddenly feel more at sea with this than ever before as well.

I'm sure you're right, though. It will help and it will be a good thing in the end. I just have to spend a little while reorienting my world in the meantime. Doesn't seem to have fazed his father, though... I guess I am the neurotic one.

[metallian.livejournal.com]

So if this is what I was hoping for, why do I feel so sad?

That seems very understandable. *hug* I get the impression you're going to be awesome at helping him, though. :)

[anaka.livejournal.com]

Thank you, hon. Hugs right back at'cha.

[innocent-man.livejournal.com]

Well, if it's any consolation, it could be a heck of a lot worse than Asperger's...

OK, it probably isn't. But hey.

I'm sure you know this already, but a lot of folks on the spectrum find that occupational therapy, specifically sensory integration techniques, are helpful. I'm not up on the meds, but I do know that as SLPs, we're advised to become best buds with the OT with the certification in SI when we're working with a client with ASD.

That's enough alphabet soup for now.

[anaka.livejournal.com]

Yes, you're right. It could be a lot worse. This isn't a terminal illness. He's not non-verbal. He will be able to live on his own as an adult and take care of himself, and otherwise have the independant life I would want for him. He has fun, he has friends, and he can tell me he loves me and stand to have me hug him. Things could be so, so much worse.

But no, it isn't a great consolation. S'okay though.

I remember the other day filling out the paperwork and seeing questions like "did your lose progress on X?" It hadn't occurred to me what it would be like to have your child progress along normally, and then just... stop, and not just stop but to lose ground, to stop being able to do what he had done perfectly well only a few months before. Good lord, how terrifying would that be. *shudder*

In answer to your question... he's had OT before, and it did seem to help. That was a few years back. After we moved to Seattle, he didn't have any academic OT related issues that seemed to deem it necessary to put him in that program. The doc did briefly mention it, though, so it may be something we discuss after the next testing round when we get the official diagnosis. I don't think he's had any SI stuff specifically, but that might indeed be a big help.

[ladycoyote.livejournal.com]

*HUGS*

There is so much love and support here. I'm not sure what else I can add. :) But wanted you to know that we're here for you too. I've seen a number of kids with Asperger's come through the clinic (mostly for OT or Speech..I'm a PT) Social skills groups seem to be a popular resource for these children.

But mom to mom, as you say, Alisdair is no different than he was yesterday or will be tomorrow, even if your whole paradigm has shifted. The good thing that will come from this are a whole slew of new considerations for solutions to any problems. It can't be a catch-all/excuse for any little behavior because kids are kids and are complex creatures, but it might help to know so you can find new ways to cope. Though, honestly, it sounds like you've been doing pretty well keeping him adjusted. :) Glad you found some community support too. A lot of times there are BBS communities run by parents with children on the spectrum. Might find some solace there too.

*HUGS*